What to do when you first find out you are Donor Conceived

These are some suggestions from late discovery UK donor conceived people…

• Take a deep breath. It is a LOT to take in, the moment you find out that you’re donor conceived. You will never forget where you were when you found out.
• Finding out that you are donor conceived can be incredibly destabilising. Many late discovery donor conceived people (DCP) talk about the identity crisis that can follow. It can feel like everything you ever believed was a lie. Whatever emotions you are feeling are all perfectly valid.
• Take another deep breath.
• Ask questions, if you can. Find out if your raising parents know the clinic or hospital where you were conceived. This can be very helpful further down the line with finding others who have been conceived at the same place you were.
• Be kind to yourself in the days and weeks that follow. The donor conceived journey can feel like a constant rollercoaster, especially in the beginning.
• Email us at Info@donorconceiveduk.org.uk for support. We are UK donor conceived people who have been through what you are currently experiencing and can provide wisdom, insights and support. We have a very supportive private Facebook group of donor conceived people and former donors who will be more than happy to answer any questions or walk along side you as you navigate your next steps. Your Facebook friends will not be able to tell if you have joined our private Facebook group.
• Talk to your trusted people about the emotions and feelings you have about finding out that you are donor conceived. The start of your donor conceived journey can be a huge paradigm shift.
• If you were born before August 1991, when the Human Fertilisation and Embryology Act (1990, 2008 amended) came into force you are part of the ‘Donor Conceived Register (DCR)’ cohort. Unfortunately, before 1991, donor conception in the UK was unregulated so clinics were under no obligation to keep records.
• If you were born between 1991-2005 you are part of the ‘Open the Register (OTR)’ cohort which is the name given to the group of donor conceived people eligible to apply to the HFEA for non-identifying information about this biological parent/your parents donor. The level of detail can vary greatly. It might be very basic information such as height, eye colour, ethnicity and occupation. But as years went on donors were encouraged to write a ‘pen portrait’ which was a more detailed description of their traits, likes and dislikes and personality type. A small number (less than 300) of donors from this era have chosen to waive their anonymity. If this is the case with your donor you will also be given this identifying information when you apply. You will also be told about any genetic (half) siblings born from the same donor(s). You will learn how many, what year they were born and whether they were male or female at birth.
• If there are other (half) siblings and you would like to connect with them the HFEA also have a voluntary register called the Donor Sibling Link (DSL) for this purpose. Please note these (half) siblings would need to know they are donor conceived, been through the OTR process themselves and volunteered their information to the DSL for a match to be possible.
• If you were born after 2005, you are part of the ‘Open ID’ cohort which is the name given to the group of donor conceived people eligible to apply to the HFEA for identifying information about your parents donor/this biological parent once you turn 18. However, it is worth noting that although the law changed in 2005 there were a lot of births that were still recorded as ‘anonymous’ after this time. For example, 72% in 2005, 56% in 2006, and 21% in 2007.  If you don’t know if your parent(s) used an Open ID donor you’ll discover this when your application to the OTR is processed.
• If your raising parents used an informal donor, so not through a licensed clinic or hospital, or you were conceived outside of the UK the HFEA will unfortunately not hold any information for you.
• See if you can get some counselling. If you were conceived after the establishment of the fertility regulator the HFEA (mid 1991) specialist counselling is currently available, for free, via: Support and intermediary service | HFEA. However, referrals for support are likely to end in Summer 2024, depending on demand for the service. If you were conceived before 1991 you are entitled to two free specialist counselling sessions via the Donor Conceived Register. The current service provider is Liverpool Women’s Hospital Counselling service – Liverpool Womens NHS Foundation Trust
• These specialist counselling options are quite short term so it might be a good idea to think about private counselling. There isn’t currently any official accreditation to guide you to a counsellor or therapist with understanding of the donor conceived experience. However, we have started to put together a list of counsellors/ therapists who have been approved by our DCP members. We also have the VERY supportive, private Facebook group with other DCP who will support you on helping to find a good match for your needs.
• Note that how you feel about being donor conceived will change as your donor conceived journey develops. How you feel about it all today probably won’t be how you feel about it all in a year or ten years time.
• Read and watch what you can about being donor conceived. This can be very overwhelming so take it at your own pace. We have lots of resources and research available on our website and this is growing all the time. These pages include links to TV shows such as ‘Born From the Same Stranger’ and the ‘You Look Like Me’ podcast, both of which are great places to start.
• Many of our community have written about their DCP experiences on our website and these will be useful for you to read so you can start to understand the myriad of different facets of what being donor conceived can mean.
• We also have many news articles listed that show how other DCP have navigated their donor conceived journey.
• Read the DCR RP/DCUK Consultation document. This is an incredibly valuable document for someone who has just found out they are donor conceived.
• Sign up at the bottom of our home page for our Donor Conceived UK Newsletter, which we aim to publish once a quarter.
• Read our response on our “UK Legislation” page to the recent HFEA Proposals on Modernising Fertility Law.
• We have put together a template letter for you to send to your GP, telling them that you are donor conceived and the possible medical implications of this. Please email us at Info@donorconceiveduk.org.uk for a copy.
• Think about doing a DNA test if you would like to trace genetic relatives. If you were conceived prior to 1991 the Donor Conceived Register (DCR) has a voluntary DNA register that carries a £100 fee if you would like to put yourself on it. Your saliva sampling has to be done by a doctor and you can pay £50 to have this done on site at Kings College University, London where the lab is.  It was the first DNA register of its kind in the world but it is a very small register (less than 300 people) all of which are either former donors or donor conceived people (DCP) so chances of a match are slim. 
• In the wake of the popularity of commercial DNA testing sites, such as Ancestry and 23&Me, these are instead the tools that will most likely yield results for people seeking biological relatives. The decision to put yourself on these global databases should not be taken lightly. Do your research and decide what you’re comfortable with. For example, there are various privacy options available which mean you can hide yourself from DNA matches. Embarking on this journey and the ins and outs of searching using these sites needs its own post, so we won’t go into depth here. Please don’t hesitate to contact us with your queries about DNA testing.
• Share this post with your trusted people so that they know what NOT to say to you: What NOT to say to a Donor Conceived Person!